Patient Advocacy in the UK

[helvella]

In a current post, contacting a patient advocate seems a sensible route.

healthunlocked.com/thyroidu...

Unfortunately, I simply cannot remember, nor can I find, the one organisation I remember being mentioned right here, on this forum!

This has prompted me to ask you all if you have any positive experiences of patient support and advocacy, including help through making complaints, in the UK?

As I want to make a list, I don't want the bad experiences. They are important, of course, but it would not be very helpful to have a Which?-style assessment. In desperation, members just need a short list to consider and, maybe, contact.

I think many are aware of PALS - which can be helpful for some purposes. (They do vary considerably.)

Please either reply on this thread or, if you want to remain anonymous, send me a Private Message.

I will collect the information (though I don't expect a long list), make sure it is published on forum, and add it to my Vade Mecum document for the future.

[janeroar]

Excellent idea helvella. The NHS has patient advocacy as one of its priorities (it says). For sure younger clinicians really feel the value of this and are pushing for it.

[Rocky]

I have used my local Healthwatch, and they have one in every area. They listen to your complaint and tell you how to report it, and they say that if they get enough complaints about the same thing that the CCG have to take note and deal with it. They deal with Doctor's, hospitals, dentists, and all health and social care

[LindaC]

The key to any advocacy work is independence from the pay master and absence can include voluntary agencies... as in, who pays the 'Ferry-Man's Funding'? As a self-employed person, along with several other professionals, I was 'blacklisted' for exactly this type of role.

The end result, after 8+ yrs, seems to have coincided with the beginning of heart issues [summer 2003, then worse by 2007], this being largely ignored as the first signs of hypothyroidism, albeit even scrappy TSH was just 0.14 and 0.11 respectively inside of 'their little safety ranges' + there were signs/symptoms as long as their arm(s). An advocate then may well have been useful BUT the assumption is that people needing 'support' have other issues!

People today don't even have stalwarts like Dr S and Dr P to go to. But, there must be good advocates about. 💚🔍💛

[nellie237]

Hi helvella,

I had a very negative experience in my local A&E last year. I sent a letter to the 'Complaints Department' at the Hospital (not like me at all). As a courtesy, I also copied in a Gastroenterologist that I had seen.

I didn't have any intention of following it up, but I hoped that the medics who dismissed me were made aware that they'd made an error.

The result: The Gastro phoned me to check that I'd cc'd him as a courtesy and told me that "The trouble is, anybody mentioned in a complaint letter will be pulled in and asked questions." For me, that was enough. I did also receive a pretty non-descript response from the Complaints dept.

[Timetraveler67 in reply to nellie237]

I complained to palls ( I’m in London) I wish really and truly I hadn’t ever done it. Terrible experience gave me a breakdown

[nellie237 in reply to Timetraveler67]

I'm so sorry that happened to you Timetraveler. I think Pals were probably quite effective initially, but are probably over-whelmed and very limited in what they can achieve now, which is very sad.

[Timetraveler67 in reply to nellie237]

Thank you Nellie i should have said what happened to me was 4 years ago so I can’t give them the excuse of being overworked as there was no covid then. Thanks again for replying to me it means a lot x

[Jumbelina]

There is a group to which I belong called Thyroid Patients Advocacy tpauk.com. I haven't used them for advocacy but they have a nice forum for advice.

[Partner20]

You have already mentioned PALS, and I would definitely recommend them based on my experience. However, I do realise that everyone's circumstances are different. In my case I made a complaint about the way in which my partner had been treated by a consultant leaving my partner unable to face talking to any medical professional regarding the specific condition in question. Firstly, PALS enabled me to speak on my partner's behalf, and to be given access to all relevant results and information. Secondly, my partner was allocated a different consultant, who is actually the head honcho herself, and the previous consultant was completely removed from the case. I was about to involve PALS again regarding lack of communication about results over a period if months, but a detailed email to the secretary of the consultant concerned swiftly elicited an apology and the results required. The advantage of emails is that there is a visible paper trail in case of the need to escalate matters. I appreciate that my experience may not be relevant to everyone, but it may be of help to some.

[TaraJR]

Healthwatch Norfolk supported us in Thyroid Support Group Norfolk, and championed our cause to have T3 put back on the Norfolk formulary by Norfolk & Waveney CCG. They backed us and advised us for 3 years, until the fight was won!

The premise of Healthwatch .. Healthwatch was established under the Health and Social Care Act 2012 to understand the needs, experiences and concerns of people who use health and social care services and to speak out on their behalf.

We exist on a national and local level, working towards the same goal of enabling people to have a voice about their health and social care systems.

Our main statutory functions are to:

- Provide leadership, guidance, support and advice to local Healthwatch organisations.

- Escalate concerns about health and social care services which have been raised by local Healthwatch to CQC. CQC are required to respond to advice from the Healthwatch England Committee.

- Provide advice to the Secretary of State for Health and Social Care, NHS England and English local authorities, especially where we are of the view that the quality of services provided are not adequate. Bodies to whom advice is given are required to respond in writing. The Secretary of State for Health and Social Care is also required to consult Healthwatch England on the NHS mandate, which sets the objectives for the NHS. healthwatch.co.uk/our-histo...

There's a Healthwatch in every county (in England) though each one was set up separately, s they do vary in effectiveness. HW Norfolk is stunning! But I know they vary.

Healthwatch England is well aware of the T3 situation, and were involved in discussions about it. Then of course, the pandemic started...